Dr. William Reeves dies

Hmmm, I have been around those 30+ years and have NEVER seen the collective "Nicey nicey" approach vis-a-vis CEBV, ME, CFS, ME/CFS or whatever you care to call it. Maybe some "leadership" factions have done it briefly, but it has been never fully supported. What I have seen is monumental infighting and bickering among patients, fractured and non-cohesive leadership positions, and a pervasive lack of consensus on internet forums. And annihilation of medics and scientists that are careless enough to involve themselves with the "cause".

And denial, denial, denial. About so many obvious things;

"We have no PR problem".

"It does not matter what the public thinks about our posts - they will never "get it" anyway".

"Comparing a low-level government bureaurcrat to Hitler or Stalin makes perfect sense".

"We are in control now because someone who USED to be involved with decisions about our illness has died - time to "pile on". THAT is sure to get us the results we are looking for . . ."

Patient response has always been fractured because the medical authorities entrusted with the responsibility to investigate and care for PWME have so signally failed.

Patient organisations are not responsible for providing care and medical treatment.
If you systematically deny care to a group of sick people over many years in Britain and the US. these people and their patient organisations will collapse into disorder and fragment.
Individuals, especially sick individuals are incapable of taking on these complex responsibilities because they are sick.

This is why we have governments and responsible institutions in a complex modern society.

It is our governments and institutions that have failed us they have abdicated responsibility.
What is more our governments know that the individual is rendered powerless to redress this injustice if the law and responsible bodies,deny their existence and rights.

All you say is true. It is now very unlikely that any government entity will step up to the plate and do what is right for the patient community. We have had our 15 minutes in the media spotlight with XMRV research and that did not turn out so well for us - it sunk like the Titanic. We still have an intact "psych lobby" cabal waiting in the wings like patient vultures with an eye to pick our bones clean by making changes to the ICD code system and DSM and continuing to publish marlarkey about the efficacy of CBT/GET therapies, and eventually switch patients over to profitable "internet based" behavioral therapies.

After the final coup-de-gras of the Lipkin Study is released, we can expect almost nothing in the way of meaningful research for a long time. All that remains is a tattered internet presence on a small number of public forums that have dwindled off of late. That is our public face, our life raft, and the well that future journalists, government officials, and researchers of ME/CFS will drink from in the forseeable future. Does it bother you to see folks in that life raft flailing about, attracting sharks, and puncturing holes in the raft you are sitting in? Or would it be better if they put the patient community first?

Patient response has always been fractured because the medical authorities entrusted with the responsibility to investigate and care for PWME have so signally failed.

Patient organisations are not responsible for providing care and medical treatment.
If you systematically deny a group of sick people care over years in Britain and the US. these people and their patient organisations will collapse into disorder and fragment.
Individuals, especially sick individuals are incapable of taking on these complex responsibilities because they are sick.

This is why we have governments and responsible institutions in a complex modern society.

It is our governments and institutions that have failed us they have abdicated responsibility.
What is more our governments know that the individual is rendered powerless to redress this injustice if the law and responsible bodies, institutions deny their existence and rights.

After the final coup-de-gras of the Lipkin Study is released, we can expect almost nothing in the way of meaningful research for a long time.

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I am looking forward to participating in a study at Mt. Sinai in New York that proposes to show, in considerable depth, the effects of exercise on ME/CFS patients. I have to disagree with your assertion.

Does it bother you to see folks in that life raft flailing about, attracting sharks, and puncturing holes in the raft you are sitting in? Or would it be better if they put the patient community first?

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Until this disease is defined well beyond even ICC this will continue to be the case that there is going to be major conflict.

There is no one patient community there are many patient communities under this giant tent known as ME/CFS. Moreover, as we've seen with Wessley, conflict will be manufactured to make us look like lunatics even if we are perfectly well behaved.

The real issue as far as I am concerned is that our so called main advocate has called Reeves a remarkable man. That is what is outrageous. The CAA is either completely clueless (quite possibly) or they are purposely to stir the pot for some reason by making such an inflammatory statement. You really should direct the "putting the patient community first" comment to Vernon. If she isn't aware that making this comment would incite the "community" then she should be gagged from making public statements.

But Floydquy, William Reeves WAS indeed a remarkable man. How could you hold otherwise when a foremost medical
expert in CFS states in an email to an LA Times reporter that XMRV is a ubiquitous pathogen, and could not be causal for the illness? I am still in awe of that sort of Chutzpah . . .

"It is almost unheard of to find an association of this magnitude in any
study of an infectious agent and a well-defined disease, much less an
[ill-defined] illness like chronic fatigue syndrome," he said in an e-mail.
It is extremely difficult to prove causation with a ubiquitous virus like
XMRV, and it "is even more difficult in the case of CFS, which represents a
clinically and epidemiologically complex illness," he said.

The real issue as far as I am concerned is that our so called main advocate has called Reeves a remarkable man. That is what is outrageous. The CAA is either completely clueless (quite possibly) or they are purposely to stir the pot for some reason by making such an inflammatory statement. You really should direct the "putting the patient community first" comment to Vernon. If she isn't aware that making this comment would incite the "community" then she should be gagged from making public statements.

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Vernon definitely started a firestorm on FB yesterday with that comment about Reeves being a remarkable man. But then, after witnessing the protests to it, she chimed in with the following lame response:

SUZANNE VERNON: Definition of remarkable: 1. notably or conspicuously unusual; extraordinary: a remarkable change. 2. worthy of notice or attention. Dr Reeves indeed fits this definition. Some of his actions affected and hurt many with ME/CFS. He also hurt me in ways many of you will not understand. I have not spoken to him in 5 years but I forgave him a long time ago and I am grateful to him because he (unknowingly) gave me the freedom to fight for and work for people with ME/CFS to solve this miserable disease.

which got more responses

JAY SPERO: Definition of tact: not putting those particular sentiments underneath this particular photo where patients could read it, misunderstood or not. Unless you hated the guy, when someone dies, it's not unreasonable that you'd 'miss' someone. Saying it as you did, that devoid of context, is something that I would have thought a distinguished professional at the executive level would have understood, especially considering why Dr. Reeves was as controversial as he was.

KEITH BAKER: You could say Fidel Castro was a remarkable man also by the definition posted by the CAA above. But I wouldn't say that after his death in a Florida communtity to the people he hurt. The CAA just doesn't get sensitivity to people with ME. Were dying slow deaths out here and the people that helped keep us here are described as Remarkable by the CAA.

ROBIN DURHAM: ‎suzanne Vernon - here's a gentle PR tip. While it's good that you clarified your use of "remarkable" in reference to Bill Reeves, and acknowledged that he was hurtful to people with ME, your original post was pretty ambiguous and that's what set people off. Remarkable is usually used in a positive sense. That's how I read your comment. You are part of an organization that has a "donate" button on its page. In the future, when addressing the patient community that the CAA purports to advocate for, don't use ambiguous language. Be clear. Something like, "Bill Reeves was a noted researcher. We acknowledge his passing and extend our condolences to his family. However we do not support or condone the fundamental hypothesis of his later work that Me/CFS is a disease rooted in psychosocial dysfunction." There, see? Drama avoided.

I am not talking about forgiveness here, i am talking about anger being directed at those who are responsible. To assume that the family of reeves are also in some way responsible, is pure anger guessing ? we can guess untill the cows can home. But we know little about about reeves family knowledge or acceptance of hes treatment of ME/CFS patients.

For all we know there could be a young family member who will be greatly distressed by outbursts against reeves after hes death. Do we care ? should we care ? well i tell you this.

unless we know for sure those that could be hurt in some way by our words of anger and hatred. ( and we can not know this for sure ) then to be insensetive to those who have no part, or knowledge, or understanding of our bellitlement. Is about hypocritic as one can get. We expect understanding and sympathy, yet when its our turn to do the same for people that might be innocent. ( Prove to me that some family members, possibly young ones are not innocent ? ) we just spew anger in any direction we see fit. Well sorry thats wrong. The only syndrome im suffering from is chronic. I know what it feels like to reach out to doctors. when in seriouse health trouble. only for it to fall on deaf ears and get no more help. as i saw wessley when a very ill young man. Do i blame wessley yes. would i blame hes 10 year old son ? no ( if he had one ? ) If folks on here can not see that distinction. then i belive they are really turning into the very people that they apparently hate so much. There has been, and will be times to talk about how wrong reeves was. But why wait untill hes dead to start a onlslaught ? for the sake of possible innocents, and we must concede there could be. We should keep hes death a seperate issue to what he did in life. for those that are not party to what he did. I know i am right about this. I dont care if others dont agree. I just think your wrong, and blinkered. End of

Vernon definitely started a firestorm on FB yesterday with that comment about Reeves being a remarkable man. But then, after witnessing the protests to it, she chimed in with the following lame response:

SUZANNE VERNON: Definition of remarkable: 1. notably or conspicuously unusual; extraordinary: a remarkable change. 2. worthy of notice or attention. Dr Reeves indeed fits this definition. Some of his actions affected and hurt many with ME/CFS. He also hurt me in ways many of you will not understand. I have not spoken to him in 5 years but I forgave him a long time ago and I am grateful to him because he (unknowingly) gave me the freedom to fight for and work for people with ME/CFS to solve this miserable disease.

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Hey BD,

Thanks for this quote. What an amazingly succinct example of everything wrong with the CAA. This response was every bit as convoluted and confusing as anything they have presented in official statements to the media about what 'CFS' is and what they are trying to do about it.

Thanks for this quote. What an amazingly succinct example of everything wrong with the CAA. This response was every bit as convoluted and confusing as anything they have presented in official statements to the media about what 'CFS' is and what they are trying to do about it.

Shane

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Ive got to agree with you Shane. This is the sort of disingenuous word twisting that justifiably makes people hate lawyers. You are a very remarkable woman, Dr. Vernon, and those remarks your behavior elicit from me are unfit for a public forum so I won't post them.

GO to CAA facebook page and read what s. vernon has to say.....her view, i disagree and reserve the right to disagree loudly and strongly.

yes, Obama and F. Collins (and Unger) are currently responsible for the terrible way the CDC is handling our disease. I have written countless letters to them (including MichelleObama since I have a son the same age as her daughter...i thought i cld appeal to her sympathy as a mother) expressing this point of view.....have you...or do you just want to take time to do a little Obama bashing?

Unfortunately still nothing has been done by our govt to help us....we are just left to rot in our beds. Perhaps you are not as sick as I am and stilll have enough quality of life left to be magnaminous to our enemies....i no longer have the time or inclination for such niceties......my life is slowly sliipping away from me...and if there is an oppty to raise a stink about how we are being treated I will take it.

the fact that Bill Reeves has just died appears to be a perfect oppty to me....i am not asking you to join me in this fight for recognition and my demand that the history of Bill Reeves treatment of ME patients be recorded truthfully.....a scam and crime against humanity. His family should be ashamed of his professional record in this arena. I know if my husband, father, brother or uncle were responsible for the suffering of so many i would be ashamed....and apologize to the world for his behavior.

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I agree thoroughly with this except I don't think his family bears any responsibility (unless there is evidence to the contrary which I dont think is likely). I feel badly for his family as I do for anyone who loses a family member unexpectedly, however that shouldn't prevent us from seizing the opportunity to expose the CDC "CFS" activities for the fraud it is and always has been. This potential benefit far outweighs the detriment of the family experiencing of hurt feelings. I also don't like being told what to do.

Thanks for this quote. What an amazingly succinct example of everything wrong with the CAA. This response was every bit as convoluted and confusing as anything they have presented in official statements to the media about what 'CFS' is and what they are trying to do about it.

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Hi Shane--

CONVOLUTED is the key word that describes most of what the CAA has called its advocacy for PWC's, and now they are at with Reeves. Here's another good example, which I responded to on their FB page:

CAA: Facts and legend intertwine where Reeves is concerned. He was a man of firm convictions who cultivated a public persona of provocateur. Although these traits often put him at odds with people around him, those who interacted with him in other settings saw different sides to his personality.
The strong reactions here to news of his sudden death are expected given the equally strong views expressed by many in the CFS community over the course of his long tenure as head of CDC’s research program. Reeves was removed from that position in Feb. 2010. By close accounts, he neither sought nor was given any influence over the program after that change was made by CDC management. Accordingly his death is unlikely to affect the current status or future direction of the program. Whether CDC can earn the respect of the CFS community through research that fulfills its mandate to control and prevent disease is the responsibility of current CDC leadership.

Reeves is survived by his wife and two adult children. We request common civility here on their behalf. This is a publicly accessible site and we anticipate that the community's reaction to this unexpected news will be closely observed. We will, as always, report comments that violate Facebook’s terms of service and Facebook administrators will take action as appropriate.

Dreambirdie Ishere:CAA: What a bunch of convoluted crap that comment above is! The FACT is that what Reeves did to PWME was criminal and the real shame is that he got away with it. Thousands of very ill people have been dismissed as psych cases and malingerers because of HIS actions, denied proper medical care by insurance agencies, left to rot in dark rooms, left to face an early death. I find it disgusting that anyone has the nerve to defend such a man. He deserves the contempt that he earned.

Do you really believe that we as a collective group of patients sharing the same diagnosis are seen as the 'bad guys' tania? I feel quite saddened to hear you say that let alone thinking you might really believe it.

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I find that to be true in many contexts. And I live in a supposedly relatively enlightened country.

we all know the wrongs that have been done from so many. very painful wrongs for some familys. But the old saying too wrongs dont make a right applys here. Though i fully understand why that ideal might be a little to hard to swallow for some. But please lets be respectful to hes family. They have likely done no wrong

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I don't think it's wrong to criticize evil. No one should criticize hitler or bin laden because two wrongs don't make a right? Pls, free at last, barb, Jennie S, and anyone else, dont state or imply that I am doing something "wrong", "morally reprehensible", or evidencing a flaw in "character"' etc. by stating the truth about our persecution.

An unpaid Jewish activist criticising Hitler would certainly not be more "morally reprehensible" than an overpaid anti-defamation Executive (who was a former Nazi party member) who praised Hitler as a remarkable man who will be missed.

No other group of people would tolerate its supposed spokespeople and highly paid association officers being former collaborators with their oppressors and white-washing their crimes. Why must we?? Vernon and McCleary need to be ousted, NOW!

I find that to be true in many contexts. And I live in a supposedly relatively enlightened country.

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How can anyone affected by this disease not feel like the bad guy? I feel like the bad guy from the perspective of the medical establishment, the government, insurance companies and to some extent family and friends (lucky in this area but still feel it). If you don't feel like the bad guy you are not experiencing the same thing I am and many people I know with this disease.

Reeves was not a 'monster' but was still responsible for a proportion of our suffering

[edit: minor rewording and order changes]

It is difficult to estimate how much suffering Reeves caused us directly or indirectly. Obviously he cannot be singled out and blamed for all the suffering we have endured or the lack of progress achieved during his time, there is a whole status quo network of causes and bunch of people for that. However, Reeves was a captain of an important and notorious ship, so he is responsible for the direction it went during his reign and the waters he steered us all into.

I do not know how much power he had while in charge, compared to the rest of the CDC he was a small fish in a big pond, but compared to the rest of the ME/CFS community he was a big fish in a small pond and yielded substantial influence. He may have done some good as a whistleblower during the funding misdirection scandal (even if to save his own skin and/or take over as head of the CFS department), the awareness campaign was a mixed bag at best, there may have been the occasional OK study, but his overall legacy ended up being the introduction of a dubious application of the CFS criteria with a dead-end shift towards poor quality research into childhood adversity and adult personality features.

Reeves' supporters and apologists may argue that he was just following what he thought was best according to his knowledge. People are often judged over their actions more than intentions, so even if we assumed that Reeves had the best intentions, he was barking up the wrong tree and his actions stagnated, hindered, or even reversed progress into understanding ME/CFS which of course had the effect of prolonging the suffering of the patient community. In other words, he is responsible for a significant proportion of that suffering or its prolongation, regardless of intentions.

People may argue that psychological research is not necessarily negative and dismissive, while researchers cannot be blamed for misinterpretations of their work. However, this is only true if such research is conducted properly without spinning the results, which in CFS research is often not the case. Furthermore, such research has not only come at the cost of other types of potential avenues and promising research, but has been used to downplay the pathophysiology and shape an erroneous perception of ME/CFS which the relevant authorities are not willing to invest the necessary resources into it. Compared to societal burden and symptoms/disability, research funding for ME/CFS is at least one order of magnitude less than it should be. Meanwhile some people are dying and the rest are growing older with wasted lives and poor quality of life. This "rolling disaster" is still ongoing with minor but not major signs of changing.

Contrary to what optimistic proponents and outside observers may believe according to the spin, the model of CFS as a psycho>somatic functional illness perpetuated primarily by cognitive and behavioural factors, is on the brink of collapse and 20 years of research in that direction has failed to deliver. I do not really want anyone to suffer, I just want the causes of suffering to be resolved and the relevant problems to be properly elucidated. I do not wish death or even ill health to psychobabblers, if anything I want them to live to see their psychobabble exposed for the house of cards that it is, to fully comprehend the mistakes made and face the deserved damage to their reputation in proportion to their personal involvement and deviation from what is real. That said, I will not be losing any sleep at all if patients/advocates initiate successful proceedings which lead to harsher non-violent punishments.

As head of the CDC's CFS division, Reeves apparently bought into the "psychobabble" and did more bad than good as a result. He bet on the wrong horse and his gamble cost us not him. That is why the ME/CFS community is angry about his legacy, critical of the rosy eulogies, and are less than sympathetic about his passing; not because we are inherently nasty people compared to the general population. We just want to be treated fairly and allocated resources according to the seriousness of the illness we face. That is all, it is not an outrageous request. Frustration and suffering will continue as long as this does not happen and people in positions of authority do not take the appropriate action relative to their capabilities.

The collective suffering that Reeves is probably responsible for in some way or another, outweighs the suffering endured when friends and family lose a loved one. His death had nothing to do with us, I am just saying that it is difficult to feel particularly sympathetic about the situation from (William) Reeves' perspective. I never wished him bodily harm, do not take delight in whatever mourning will result, do not want people that knew him to suffer unfairly. I would sacrifice my own life if it meant all the above positives could be achieved without furthering suffering and there was a timely reversal of the damage that psycho>somatic relegation has done to the understanding of ME/CFS. As many of us long-termers will probably have to spend much or even the rest of our lives enduring or working on this issue anyway, our lives are already at least partly sacrificed. I hope that before I die I would have made a positive difference to the world.